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Alternative diagnoses to chronic fatigue syndrome in referrals to a specialist servic

Discussion in 'Latest ME/CFS Research' started by Dolphin, Feb 3, 2012.

  1. rlc

    rlc Senior Member

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    Hi Dolphin RE It is not clear that Dr. Mirza wouldn't include people with a diagnosis of ME when talking about the "myth of chronic fatigue syndrome". He doesn't mention ME as something separate.

    From my reading it seems that Dr Mirza is only talking about CFS as defined by the likes of the CDC and NICE and that he is firmly of the opinion that it is a garbage diagnosis and that a proper investigation of these patients using up to date information will almost always find the real diagnosis.

    I would imagine that Dr Mirza wouldnt be including ME patients in this for the simple reason that ME patients according to NICE and CDC cant possibly get a CFS diagnosis, because if they are properly investigated they will be found to have things like POTS, failed Romberg tests, failed MRIs, SPECT, low ESR, subnormal temperature etc, plus a large assortment of other symptoms which arent included in the criteria, which makes them ineligible for a CFS diagnosis because they dont fit the CDC and NICE guidelines, if doctors are actually going to follow what these criteria say. He seems to be only talking about CFS and Im not sure what his opinions on ME are and if he has had much experience with ME patients, true ME as opposed to CFS has always been a rare condition and it is quite possible that he hasnt seen many of them.

    RE I'm afraid I tend to be sceptical of individual doctors in private practice, whether they're Dr. Mirza, Dr. Hyde, or whoever. They can hype aspects about their practice and what they do. To convince me and more importantly convince the medical professional in general, they need to publish their findings in peer-reviewed journals (e-letters don't count).
    Then everything can be transparent.

    Whether there were lots of other cases of vitamin D (or indeed Vitamin B12) in this cohort who wouldn't be classed has having CFS or ME if they got it treated has not been proven it seems to me.

    If people like Dr. Hyde published more, it would be easier for people to push for testing. When dealing with medical authorities, they tend to look for papers in peer reviewed journals.

    Your entitled to be as skeptical as you wish, but there is absolutely no need for Dr Mirza to publish anything regarding wrong reference ranges for the likes of Vitamin D, B12, Glucose and TSH, because the work showing that they are wrong has been published by others often including estimates of how many millions of people are having their diagnoses missed because of the use of out of date reference ranges, all the other conditions that he says should be ruled out and are not being included in the likes of the CDC and NICE guide lines are also proven published medical and scientific facts. All he has done is to keep up to date with modern research and illnesses that cause symptoms like those attributed to CFS, and then used this knowledge to find out what is wrong with his patients. It is a great shame that the likes of the CDC, NICE and are large amount of the doctors who are claiming to be experts in CFS are incapable of doing the same. He doesnt need to convince the medical profession, or publish anything, the medical profession needs to keep up to date with modern science and do their jobs properly.

    RE whether they're Dr. Mirza, Dr. Hyde, or whoever. They can hype aspects about their practice and what they do.

    If Dr Mirza was trying to hype his practice do you really think he would chose to put articles in the replies section of the BMJ where hardly anybody would see it except doctors. His practice is in the states, so why hype in a UK journal? Saying that he is hyping his practice seems to imply that you think he is exaggerating? Do you really believe he is risking his medical license by doing that in the BMJ?

    RE Whether there were lots of other cases of vitamin D (or indeed Vitamin B12) in this cohort who wouldn't be classed has having CFS or ME if they got it treated has not been proven it seems to me.

    And it more than likely wont be proven because nobody will do the tests, but if 1 in six UK citizens have severe vitamin D deficiency, and yet they only found four case out of all those people, well Id be putting my money on them having missed quite a few.

    2. RE If people like Dr. Hyde published more, it would be easier for people to push for testing. When dealing with medical authorities, they tend to look for papers in peer reviewed journals.

    Its not that easy to get things published and is expensive, but once again everything that Dr Hyde says should be done to rule out other diseases that causes similar symptoms to ME and CFS has been published often hundreds of times, all he does is to make sure he does all of them so he doesnt miss anything. Its just basic medicine done properly. So the idea that medical authorities look in peer reviewed journals for their information is unfortunately untrue, if they did the likes of the CDC would include the likes of Celiac and Vitamin D deficiency in their lists of conditions to rule out, the fact is that the lists complied by the likes of the CDC and NICE of other conditions to rule out are woefully incomplete often contain factual errors and have obviously not been written by people who are, one expert diagnosticians, and two people who have spent a reasonable amount of time going through peer reviewed journals looking for the latests information on fatigue causing illnesses. And until these lists are updated along the lines that the likes of Dr Mirza suggests then millions of people are going to continue to be misdiagnosed and become part of the mixed cohorts that are causing all the trouble in research.

    The statements that both Mirza and Hyde are making on how to rule out other conditions are all based on published medical knowledge, and the reality is that there is nothing amazing about what their saying, its just a matter of staying up to date and ruling out all possible conditions, which is exactly what is not happening for the average patient or what the CDC and NICE are advocating, which is why so many people get misdiagnosed. Despite the fact that it is supposed to be a disease that can only be diagnosed by excluding all others!

    All the best
  2. Dolphin

    Dolphin Senior Member

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    You seem to use a rather literal definition of the NICE and CDC criteria. I will have to disagree with you that people with ME can't get qualify for those CFS criteria because they can have certain abnormalities.
    To take one example you gave, POTS has been found plenty of times with people with CFS. A quick search of PubMed will show that.
  3. Dolphin

    Dolphin Senior Member

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    Dr. Mirza can do what he wishes. But you would have difficulty convincing medical authorities that a substantial percentage of the people with a diagnosis of CFS or ME would get well if they were treated for these deficiencies. That specific claim needs evidence.

    You talk about lobbying for testing and complain people don't do it more. This is the sort of issue that comes up/would come up.
  4. Dolphin

    Dolphin Senior Member

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    Hype can take place in many ways.
    I believe he is exaggerating in his letter
    I doubt it's a threat to his US license to do so.
  5. Dolphin

    Dolphin Senior Member

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    Just because people have a severe Vitamin D deficiency doesn't mean they won't be seen as still having CFS or ME after treatment.
  6. Dolphin

    Dolphin Senior Member

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    Has Dr. Hyde said this or are you just making spontaneous excuses for him?

    I don't recall any charge being required for the Journal of CFS. All sorts of papers were published in that.
    Similarly now in the Bulletin of the IACFS/ME one can get published for free.
  7. Dolphin

    Dolphin Senior Member

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    It's all very well for Dr. Hyde to say all possible conditions should be ruled out. Doctors would love to do that with every single patient that comes through their door. However, the reality is that whether the tests are paid for by a public health body or a private health insurer, they're not going to want to test each patient for every single possible condition; nor is an individual paying for them out of pocket.

    However, if doctors write up, say, consecutive histories and show that certain specific diagnoses were found in patients with suspected ME or CFS, that could help.
  8. rlc

    rlc Senior Member

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    1. Hi dolpin, RE, You seem to use a rather literal definition of the NICE and CDC criteria. I will have to disagree with you that people with ME can't get qualify for those CFS criteria because they can have certain abnormalities.
    To take one example you gave, POTS has been found plenty of times with people with CFS. A quick search of PubMed will show that.

    Yes I am taking a literal definition of the NICE and CDC criteria because, if one is to be scientific and stick to the facts, a literal definition is the only one that can be taken!!! NICE and CDC define a illness that has no failed tests, that according to them is what CFS is, therefore if patients have failed tests they cannot have CFS! Unfortunately for ME patients the tests they fail are not standard tests and doctors are told not to do the tests that find ME anomalies in the likes of Fukuda, which leaves them stuck with a CFS diagnosis, but good doctors will do these tests which they fail, which then means they cant have a CFS diagnosis according to the CFS criteria.

    Dr Mirza is talking about the illness that is defined in NICE and CDC definitions, and instead of taking the logical attitude that most of the medical profession has taken and come to the conclusion that it is impossible for a patient to have a physical medical condition and have no measurable physical anomalies, so therefore they must be depressed, he has expanded on the limited sets of testing outlined by the CDC and NICE and found that the patients do have measurable physical anomalies and they are caused by known illnesses and when treated the patients get better.

    The fact that other researchers are using the name CFS on their research into mixed cohorts of people with a wide assortment of conditions including ME does not prove that these things are found in CFS, they prove that the patients dont have CFS as defined by the CDC and NICE and that these definitions are a joke, because you cant have a physical illness without measurable physical anomalies. CFS is a made up illness that has no basis in scientific reality that we have the CDC to thank for, ME however is a real illness with a long history of medical research behind it.

    RE Dr. Mirza can do what he wishes. But you would have difficulty convincing medical authorities that a substantial percentage of the people with a diagnosis of CFS or ME would get well if they were treated for these deficiencies. That specific claim needs evidence.

    You talk about lobbying for testing and complain people don't do it more. This is the sort of issue that comes up/would come up.

    The evidence that these kind of deficiencies cause these kind of symptoms is already published medical facts, for which the evidence has been found and the more up to date doctors in the world do treat patients accordingly. It is up to the likes of the CDC and NICE to update their criteria on the basis of scientific facts, nobody has claimed that treating these kind of deficiencies will help ME patients, the article is about CFS as defined by NICE.

    RE> Hype can take place in many ways.
    I believe he is exaggerating in his letter
    The myth of Chronic Fatgue Syndrome
    I doubt it's a threat to his US license to do so.

    This statement is blatant defamation! For someone who is so keen on having evidence it might be a good idea if you had some to back up your defamatory comments! Of course lying in a respected medical journal would damage his career.

    RE Just because people have a severe Vitamin D deficiency doesn't mean they won't be seen as still having CFS or ME after treatment.

    Of course there will be people who have ME who also have vitamin D deficiency, and treating the vitamin D deficiency will only fix that and they will still have ME, but with a rate of 1 in 6 people in the UK with severe vitamin D deficiency there will also be a lot of people who only have vitamin D deficiency who have wrongly been misdiagnosed as CFS and they will be cured with treatment.

    1. RE Has Dr. Hyde said this or are you just making spontaneous excuses for him?

    I don't recall any charge being required for the Journal of CFS. All sorts of papers were published in that.
    Similarly now in the Bulletin of the IACFS/ME one can get published for free.

    No Hyde hasnt said this to my knowledge and I have no need to make excuses for him or anyone else, it is a fact, to get a scientific paper published they have to be done in a certain way, to do a study like this would involve recruiting several hundred patients who have all been diagnosed with CFS according to either the NICE or CDC requirements and they will have to have had done only the tests outlined in these criteria, this will have to be overseen by more than one doctor to show that there is no bias, all of these patients will then have to be tested for all the other things that Dr Mirza recommends, and all results recorded, the patients will then have to undergo treatment for all the conditions that they have been found to have and all the results recorded. This will take many months to do and a considerable amount of money!! Both Dr Hyde and Mirza are not researchers they are working doctors, who do not have the time and resources to do this, and as I said in my earlier post it is a pointless waste of time because the research has already been done that shows that these conditions cause the same kind of symptoms as CFS. NICE and CDC just need to be updated to include these conditions. Getting things published in the likes of the now defunct Journal of CFS or the bulletin of IACFS/ME is also pointless for influencing main stream medical opinion, things need to be published in reputable journals like the BMJ or Lancet etc, those other journals are not taken seriously by main stream medicine.

    1. RE It's all very well for Dr. Hyde to say all possible conditions should be ruled out. Doctors would love to do that with every single patient that comes through their door. However, the reality is that whether the tests are paid for by a public health body or a private health insurer, they're not going to want to test each patient for every single possible condition; nor is an individual paying for them out of pocket.

    However, if doctors write up, say, consecutive histories and show that certain specific diagnoses were found in patients with suspected ME or CFS, that could help.

    Its not that doctors would love to do that with every single patient, most doctor are not aware that these tests need doing, or are unaware that the out of date references ranges are wrong, in a lot of cases the tests have already been done, none of the tests that Dr Mirza says need doing are expensive and most of them are simple very inexpensive blood tests, most of the tests that Dr Hyde recommends in the complexities of diagnosis are also cheap simple blood tests, with the exception of the likes of Doppler scans and ultra sounds etc which as far as medical tests go are very much on the cheaper end of the scale. The fact is that most doctors are not well versed in fatigue causing illnesses and dont really know what theyre doing as the study that this tread is about more than illustrates, where the doctors have missed so many conditions that they are trained in med school to diagnose, and if they turn to the likes of the CDC and NICE guidelines for guidance then they are going to be given bad advice. Which is why they need to be updated to include all conditions based on modern research.

    It is actually the job of the like of the CDC to do their research properly, they should know all this and include it in their guidelines, for a doctor to right up as you suggest consecutive histories is going to take a considerable amount of time and effort, which will cost both them and the patients that they are unable to see while doing this, and as with the study that this tread is about and other studies from the NHS which show appalling misdiagnosis rates is likely to be ignored, Dr Hyde after all has written a complete book on misdiagnoses amongst patients diagnosed with CFS and the powers that be have ignored that as well. Basically the CDC and NICE havent done their job properly and dont seem to be interested in admitting their mistakes.

    All the best
  9. Dolphin

    Dolphin Senior Member

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    Either you are more "scientific" than all the researchers, reviewers and scientific and medical journals that publish papers which have abnormalities in CFS; or else you're interpreting it in a weird, twisted way to suit your agenda.

    I'm afraid you haven't convinced me you're a greater authority on science and medicine than all these journals, researchers, etc., so it looks like the latter is the case.

    NICE guidelines just recommend what is seen as economic for the UK NHS to pay for. They don't recommend specific tests for lots of conditions that would have shown differences between groups in research.

    I'm not going to bother replying to this.
    As I point out above, the way you are using CFS is weird and not used by the researchers in the field.
  10. Dolphin

    Dolphin Senior Member

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    Two things.
    He's not really "in" a medical journal - these are online comments.
    I didn't say he was lying, I said I believe he was exaggerating.
    But I can't be sure - maybe he sees a particular sort of patient that causes him to believe that "chronic fatigue syndrome is myth".

    His little e-letter certainly hasn't convinced the medical profession which was my initial point: comments that aren't in peer-reviewed journals don't have the same status as those that are.

    This hasn't been proven (that there are lots of people who had a diagnosis of CFS who get cured when Vitamin D is treated). You are making extrapolations. To convince medical authorities of this, it's best to have "proof".

    Regarding Dr. Hyde and the reasons you are giving as to why it would be difficult for him to publish
    He already sees the patients. Researchers often publish retrospective papers on their practices and the patients they see. They don't have to do extra tests to do it, nor do they need to recruit extra patients.

    You might have a grand plan about the ideal research you would like to see done, but that isn't the only possible research that can be done.

    You were complaining about other people and how they don't lobby in the way you'd like them to for tests. Well, I think many people wouldn't trust you to lobby for them with this sort of attitude, where you wouldn't quote useful findings from peer-reviewed journals because they don't have sufficient status for you.
  11. rlc

    rlc Senior Member

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    Hi Dolpin RE Either you are more "scientific" than all the researchers, reviewers and scientific and medical journals that publish papers which have abnormalities in CFS; or else you're interpreting it in a weird, twisted way to suit your agenda.

    I'm afraid you haven't convinced me you're a greater authority on science and medicine than all these journals, researchers, etc., so it looks like the latter is the case.

    It is neither a weird or twisted interpretation it is what both NICE and CDC say, this situation with researchers saying that they have been finding anomalies in CFS patients has come about because of the insistence of mainly US researchers of sticking the name CFS on their research, a large number of them have recently stated in the ICC that these findings actually are for ME patent not CFS and that the two are completely different conditions, in fact they state that those which do not have ME are to remain diagnosed with CFS under either NICE or CDC criteria, which are very clear that CFS do not have measurable physical anomalies and if any are found they cant have CFS

    As Dr Broderick has just stated all these failed tests results are for ME not CFS

    Tilt tests can identify orthostatic intolerance (OI) [2022]. The use of 24-h Holter heart monitors and cardiac MRS can identify abnormalities in heart function [2326]. SPECT scans can identify cerebral hypoperfusion, and other brain imagery tests can identify additional brain abnormalities [2731].

    It is unfortunate that researchers didnt listen to Dr Hyde years ago that CFS and ME are different, because if they had a lot of this confusion would have been avoid. So Im afraid your view that there is lots of research that shows physical anomalies in CFS is out of date and factually wrong. Im certainly not saying that Im a greater authority on science and medicine, I saying that these researchers have admitted that they have been putting the wrong illness name on the research publications, and CFS shouldnt have been there in the first place.

    RE Two things.
    He's not really "in" a medical journal - these are online comments.
    I didn't say he was lying, I said I believe he was exaggerating.
    But I can't be sure - maybe he sees a particular sort of patient that causes him to believe that "chronic fatigue syndrome is myth".

    His little e-letter certainly hasn't convinced the medical profession which was my initial point: comments that aren't in peer-reviewed journals don't have the same status as those that are.

    He may only be in the online comments but he is on the BMJ website for all the world to see, Im just trying to raise awareness of what hes saying because it may help some people.

    To say that he is exaggerating, is to say he is falsifying his data, i.e. lying, which is defamatory!

    His practice may not be in an area that has many if any ME patients, rare infectious diseases do not spread themselves out evenly throughout the world, but that doesnt change the fact that he is getting sent large numbers of people who have been diagnosed with CFS that have been wrongly diagnosed and he has tried to share his knowledge of how to help people in this situation, who otherwise will spend the rest of their lifes suffering needlessly.

    His e-letter may not have convinced the entire worlds medical profession, but it has help several people I know get cured by taking it to their own doctors, as the medical profession has been quite happy to ignore vast amounts of peer reviewed research into ME, and are more then likely to ignore the research that this tread is based on, it comes as no surprise to me that they havent done anything about Mirzas article either, but there is no harm in trying to raise peoples awareness on these issues, someone somewhere might be able to take it to a higher power.

    RE This hasn't been proven (that there are lots of people who had a diagnosis of CFS who get cured when Vitamin D is treated). You are making extrapolations. To convince medical authorities of this, it's best to have "proof".

    Im sorry but you dont have an understanding that medical research has proved a long time ago that vitamin D deficiency causes profound fatigue and muscle pains etc, it is no different to having Hypothyroidism on the list of diseases to rule out. The Stanford researchers have it in their list of conditions to rule out. All that is needed is for the likes of the CDC and NICE to add it to the list, the research has been done.

    Regarding Dr. Hyde and the reasons you are giving as to why it would be difficult for him to publish
    to do a study like this would involve recruiting several hundred patients
    This will take many months to do and a considerable amount of money!!
    He already sees the patients. Researchers often publish retrospective papers on their practices and the patients they see. They don't have to do extra tests to do it, nor do they need to recruit extra patients.

    You might have a grand plan about the ideal research you would like to see done, but that isn't the only possible research that can be done.

    What your suggesting is not a proper piece of scientific research, it is just a Doctor compiling notes on patients, a proper scientific paper will need the patients to have been seen by another doctor otherwise it is wide open to bias, to do this would involve recruiting new patients and starting again, which will be expensive, it is not a grand plan, it is how scientific experiments have to be done, if they are going to have any credence in the medical world, especially in this area of medicine where most of the medical community think CFS is a mental illness anyway. If you want proof it would have to be done properly, but as I keep saying the research that the type of conditions being mentioned by the likes of Drs Mirza and Hyde cause these types of symptoms is established medical fact, and all that is needed is for NICE and CDC to add them to the lists.

    1. RE Getting things published in the likes of the now defunct Journal of CFS or the bulletin of IACFS/ME is also pointless for influencing main stream medical opinion, things need to be published in reputable journals like the BMJ or Lancet etc, those other journals are not taken seriously by main stream medicine.

    You were complaining about other people and how they don't lobby in the way you'd like them to for tests. Well, I think many people wouldn't trust you to lobby for them with this sort of attitude, where you wouldn't quote useful findings from peer-reviewed journals because they don't have sufficient status for you.

    If you would care to read what I have written properly before sending snotty replies, you will find that I said that journals like Journal of CFS and the bulletin of IACFS/ME are not taken seriously by MAIN STREAM MEDICINE!!! I did not give any opinion of my own on them at all. I certainly never said anything like I wouldnt quote from them.

    Anyway Im getting the distinct impression that this conversation with you is pointless, if you dont feel that that the likes of the CDC not having very common illnesses like celiac, hemochromatosis, vitamin D deficiency etc in them, is something worth advocating to be changed, fine dont do anything about it, personally I think raising awareness of these issues is a great thing to do, which has the potential to relieve the suffering of millions of people. Personally Im very grateful to the likes of Drs Mirza and Hyde for taking the time to write about these issues and provide people with helpful information, if you chose to see their good actions as dishonest thats your choice. No offence but I wont be continuing this conversation with you because I have better and more productive things to do with my time, and I feel it is going nowhere, hopefully some of the other people reading have got something out of it.

    If you wish to tell Dr Mirza and Hyde that they are exaggerating as you put it, or how to publish things to your satisfaction Dr Mirza can be contacted here

    Endocrinology Diabetes Metblism
    399 Grant Avenue Road Suite 1
    Auburn, NY 13021
    Phone: (315) 253-2669

    And Dr Hyde can be contacted here

    http://www.nightingale.ca/index.php?target=contact

    All the best
  12. Dolphin

    Dolphin Senior Member

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    rlc Neither am I going to waste my time replying to your long posts based on weird definitions of CFS. Of course CFS has no abnormalities associated with if you say somebody can't have CFS if they have an abnormality. But such circular arguments won't convince people in (professional) positions of power with regard to changing policy: it was your complaints on these (policy) matters which prompted me to (partly) engage with you, that you were unhappy with what other people do. Well, I'm unhappy with people who sit on the sidelines and criticise the work others do and say/appear to say that all we need to do is follow Byron Hyde and the like and we'll be alright (and similarly if we don't, we're wrong). Because, as I see it, you don't bring much to the table as the views don't have much published evidence behind them. For example, I can't be sure that SPECT scans are these brilliant tests (100% sensitivity or close to it) he portrays them to be and certainly we will have great difficulty convincing others without published papers. Similarly some of his other claims. I don't tend to put all my eggs in one basket esp. without published evidence.

    Why should it be left to me to contact BH when you're so concerned about and convinced of his views? I've plenty of other ME and CFS researchers and clinicians I believe are doing good work. BH is just one of many for me. But so many of your views revolve around his views. And he's not getting any younger: in 5 or 10 years (possibly less), he'll be too old to publish anything. If he hasn't published, he won't leave much of a medical legacy in terms of what can have influence for patients worldwide. Similarly I'm less dependent on Dr. Mirza's views gaining prominence than you are.

    Published papers are what can be quoted in academic medical discussions. You may get away with a little grey literature but not much.

    BH *is* associated with a research foundation - the Nightingale Research Foundation. What researchers apart from work on his patients have they supported in, say, the last 10 years?
  13. rlc

    rlc Senior Member

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    Obviously dolphin and I have reached a dead end, but for anyone else reading, who might not see where I coming from, they might like to ponder this.

    The powers that be in the US and UK have created a disease in their CFS definitions that they say if you have any other disease or measurable physical anomaly you cant have CFS, which to start with is nonsense because people can have two conditions, if you look at figure one in the original article you will see that they excluded some people because they were obese! The reason for this is that being obese explains the fatigue so obese people cant have CFS!!???

    So if you then ask yourself what other physical diseases you cannot get because youre obese, the answer is none, obese people can even get malnutrition because they often dont eat enough healthy food for the demands that their extra weight puts on their body. So according to the CFS definition CFS is not a physical illness.

    If you then ask your self are there any psychiatric disease that you cant have if youre obese you will find that the answer is none, so CFS cant be psychiatric either. So according to the geniuses (not) that have written the CFS criteria being obese makes you immune to CFS, which means according to their logic if you have CFS and you then greatly over eat for the next six months and become obese you will be cured from CFS, as anyone with any kind of ability to use logical thought can see, the CFS criteria do not define any real illness at all, the same applies with any other kind of physical anomaly or disease if someone finds one you are immediately cured from CFS according to the criteria, which makes CFS like a mirage the more you look into it as soon as you find a condition that explains the symptoms the patient no longer has CFS.

    When it comes to research, the same applies if you find something that explains it the patient no longer has CFS, if you find that they have a coxsackie B infection they no longer have CFS, they have a coxsackie B infection etc

    Unfortunately although this is all very obvious, researchers have been using the name CFS on their research as if it is a real disease, although by its own definitions it cant possibly exist! And it is according to the CFS definitions completely impossible for researchers to ever find the cause of CFS because as soon as they find a measurable anomaly that explains the symptoms, the mirage effect kicks in again and the patient no longer has CFS.

    What researcher have been finding are the anomalies of ME and all the other misdiagnosed conditions that have been making up the mixed cohorts that they have been researching, which is why all the research is full of contradictions and makes no sense, basically they should not have used the name CFS on their research and should have tested the patients better to rule out other conditions.

    However I must admit I was delighted to see the outbreak in common sense that has been shown by the CFI researchers who lipkin is working with, who have refused to use the name CFS and instead are just investigating patients with a certain set of symptoms after all how can anybody use the name CFS which its own definitions show cant possibly exist, hopefully other researchers will stop using the name CFS which only adds to the confusion, and they will realise that they are dealing with a lot of different conditions that have all been wrongly named CFS and start to sort this mess out.

    All the best
  14. Dolphin

    Dolphin Senior Member

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    That may be your belief. But numerous abnormalities that have been found and published on CFS patients suggest it's an odd one, at variance with how the exclusions are used generally.

    It's maybe a bit like interpreting laws.

    Firstly, Peter White is a psychiatrist and an ideologue. His views aren't accepted by a lot of people in the field (I'll come back to that).

    I think a distinction needs to be made between criteria for research and clinical criteria.

    Most people want fairly pure samples for research. Research money is hard to get. If it's been raised by patient organisations/charities, it will have involved patients and/or their families donating their precious money and/or having fund-raised for it. People don't want to waste that money.

    So, for example, if you're doing research to test the use of SPECT scans: do you want to have exclusions or not? Without exclusions, you risk coming to incorrect results in your research. The research might come to the conclusion that SPECT scans have no value when they do, for example.
    Once one does research on a "fairly pure" sample, in clinical practice a good physician would use the tools available. So if a person has a particularly abnormality that has shown up in fairly "pure" ME or CFS cohorts in research and they test somebody who has comorbidities (such as severe obesity), and they have the abnormality also, that could help them diagnose the case.

    From reading the Peter White/Barts submission on the draft NICE guidelines he/they would love to not have to deal with lots of symptoms. For example, they claimed that IBS shouldn't be dealt with in the NICE guidelines for CFS/ME, that it was a separate condition and that the IBS guidelines would do just fine. Few other people hold this view.

    What about the Chia research on CFS for example which found enteroviruses.

    The CFI is the Chronic Fatigue Initiative. Most patients I know prefer the term Chronic Fatigue Syndrome to Chronic Fatigue to distinguish that it isn't just the symptom chronic fatigue they suffer from (amongst other reasons). That is probably worth a whole thread on its own (whether people think "Chronic Fatigue" or "Chronic Fatigue Syndrome" is better.
  15. Firestormm

    Firestormm Senior Member

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    ME Research UK in their Autumn edition of Breakthrough last year produced a feature from Professor Newton, that I am also going to be using shortly in my attempt to reinforce the need for medical clinician specialists leading CFS/ME Services in the land (we have lost ours and they don't seem to want/can afford to replace him).

    Anyway, it ties in nicely I think with the paper that began this thread: http://www.meresearch.org.uk/information/breakthrough/Breakthrough_Autumn2011.pdf With thanks to Tony Mach for popping this on his blog for me to see :thumbsup:

    The correct diagnosis: Are we getting better at diagnosing ME/CFS? It's a very similar style to that of Devasahayam and White from what I have read so far, and reaches the conclusion that 40% of referrals made could have an alternate diagnosis.

    Sorry - it's on page 8 :D
  16. carol

    carol

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    You might be interested to know that I was referred to a cfs clinic by my Dr due to "unexplained excessive fatigue and hypersomnia. At the time I was taking Fentanyl 75 patches and oral morphine when needed for severe pain. I had previously been told I had either Ankylosing spondylitis or psoriatic arthropathy about 30+ years ago. I was placed on opiates 25 years ago. The fatigue started 10years ago around the time I was switched from morphine to fentanyl which is I believe 100 times more potent than morphine. I was subsequently diagnosed with cfs. When the pain increased the fentanyl was increased to 100. I became bedridden with severe chest pain, dizziness and difficulty breathing. I was informed by my Dr I was simply having a panic attack. After 3 months of hell I decided to do my own thing and endured a rapid withdrawal from fentanyl NOT RECOMMENDED! I am now on Fentanyl 25 and awake!!!!! I never had cfs, just opiate side effects! Cfs is an appalling illness but Drs appear to be to be using the diagnosis without too much thought; or they did in my case. In my opinion UK GP's appear to have either lost the art of diagnosing or have become lazy. To not be able to tell the difference between opiate side effect and cfs is appalling.
    Enid and Dolphin like this.
  17. Esther12

    Esther12 Senior Member

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    Sorry to hear about your needless suffering carol, but great to hear that now you understand that cause of your fatigue, you're feeling much better.

    I think that a lot of doctors can exaggerate their understanding of medical matters, and the meaningfulness of the diagnoses they hand out. Under a biopsychosocial approach this sort of manipulation can be more intentional and informed, but I'm not sure if things have really got much worse - I suspect that similar things were done in ignorance thirty years ago.
  18. rlc

    rlc Senior Member

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    Hi firestorm thanks for the link, personally I think that these levels of misdiagnosis are the primary cause for all the trouble in finding the cause of ME. Because these misdiagnosed people have been being included in research studies, which is corrupting the results and this has been going on for the last thirty years.

    It is exactly what Doctor Henderson predicted would happen if a criteria was invented which just had a collection of symptoms and no diagnostic test for ME.

    I must admit to being somewhat baffled and disappointed that the new ICC has yet again come up with just another set of symptoms to be used to make the diagnosis, and has avoided making a criteria based on diagnostic tests that ME patients have been shown to fail.

    As Dr Broderick has just stated all these failed tests results are found in ME.

    Tilt tests can identify orthostatic intolerance (OI) [2022]. The use of 24-h Holter heart monitors and cardiac MRS can identify abnormalities in heart function [2326]. SPECT scans can identify cerebral hypoperfusion, and other brain imagery tests can identify additional brain abnormalities [2731].

    Why not make having these failed tests the corner stone for an ME diagnosis, instead of basing it just on symptoms, even if it is just for research purposes, so that cohorts can be found that just have ME, it will also take ME out of the realms where the psychiatrists can interfere. Unfortunately Dr Hyde is the only one that it prepared to write a criteria that includes testing.

    A forty percent misdiagnosis rate for any illness is criminal!!! And so many people are having their lives destroyed because of it, but it is probably only the tip of the iceberg, Dr Hyde who investigates patients far more intensively than the patients in these studies finds 75% have missed serious illnesses being wrongly diagnosed as CFS.

    I dont know what can be done about it, as the powers that be dont seem to care, and I dont know if any attempts have been made to get this kind of research showing alarming misdiagnosis rates to the media in the UK?? But as I see it until this changes, and patients are properly investigated to rule out all other possible diagnoses, progress into getting a cure for ME is always going to be severely hampered because of mixed cohorts, and vast numbers of people are going to keep suffering and often dying needlessly because of being falsely diagnosed with CFS.

    All the best
  19. Firestormm

    Firestormm Senior Member

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    Here's something else to think on rlc. If these specialists were able to recognise those with alternate diagnoses then does that mean anything in terms of the present criteria or does it say more about the lack of training among referring physicians?

    What I mean to say is: Why were these alternate diagnoses not spotted before referral given that we are still talking about having no specific 'test' for CFS/ME?

    Is it a question of experience and knowledge? If so what difference would improving/changing the existing e.g. NICE criteria achieve? Maybe it says a lot about the lack of training among GPs for example. I mean if the bulk of the referrals came from GPs and they were mistaken - which is what we're saying after all - then something is wrong somewhere.

    I take your point though. Apply these percentages to the current population of patients with my diagnosis (including me of course) and you shrink the 'pot' overnight. Hypothetically speaking, if each and every patient with my diagnosis were to be referred to an acknowledged clinical specialist - how many would pass muster even with the present criteria (assuming they were applied)?

    Think of all the patients who are in our 'pot' who might, just might, have an alternate explanation for their condition. Who might, just might be afforded better and more effective treatment with a different diagnosis. Kind of staggering really.
  20. Dolphin

    Dolphin Senior Member

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    What thresholds should be used with these tests? What sensitivities and specificities do they have?
    A test could find abnormalities in, say, 50% of ME patients and one could say the test can "identify abnormalities". It doesn't mean it's anywhere close to being suitable in terms of being a diagnostic test.
    Perhaps an algorithm of 10 (say) tests might do the trick (or it might not).
    But there's no data I'm away that combines tests like this.

    Because it's not clear what tests are suitable.

    And is unlikely to be used by many, as other people don't necessarily agree the tests mentioned have 100% sensitivity, etc.

    The impression somebody I know who attended him got was he was more excited about, and focused on, the possibility that he could find some abnormality that might be said to be a separate condition, rather than seeing it as a comorbidity or simply part of the ME complex - when the latter seemed by far the most likely scenario with this long-term stable patient.

    This makes me not feel confident with regard to percentages he might throw out. Of course, if he published the data we could decide the validity of his claims.

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